30th June – Because I knew you, because I knew you I have been changed…

There is a song from a musical, and while it doesn’t completely fit… There are elements!

There are two friends, roommates, and this is an extract from one of the songs sung:

I’ve heard it said
That people come into our lives for a reason
Bringing something we must learn
And we are led
To those who help us most to grow
If we let them
And we help them in return
Well, I don’t know if I believe that’s true
But I know I’m who I am today
Because I knew you…
Like a comet pulled from orbit
As it passes a sun
Like a stream that meets a boulder
Halfway through the wood
Who can say if I’ve been changed for the better?
But because I knew you
I have been changed for good

Now I don’t know if I have been changed for good, but its most defiantly true that I have been changed!!
I know that I will do my best to move heaven and earth for someone I care about, any of my friends could tell you that. I’d drop everything to support any of my friends, and will go further the more I care!
At the same time anyone who knows me, even a little bit, knows I’m a carnivore at heart, I don’t really believe in vegetables. So it has come as somewhat of a surprise to realise how much you have changed me in a tangible way that I can see, and makes me wonder what other changes you have been instrumental in that I know nothing about.
Because today I for the first time in my life bought a vegetarian pizza, while unaccompanied by a veggie, for me for my tea! (And for this very uncharacteristic act I hold you completely responsible.)
On reflection it is hard to say if “I have been changed for good” but it is most defiantly a change!

20130630-221559.jpg

29th June – what have you done today to make you feel…

I’m shattered, I went to pride as a volunteer and had a long and lovely day.
I caught the last train home after a lovely dinner and chat putting the world to rights.
It’s been the first time in ages that I’ve felt alive, able to talk to someone new about stuff that actually means something to me and had them do the same in return.
It was kind of cool!

20130715-200414.jpg

28th June – Alien concepts

I used to be told that drinking orange juice would give you headaches especially if you drank too much. However under this new extraordinary regime, orange juice with its weird and wonderful vitamins apparently eases headaches and this this along with the eating cheese to stop headaches is a very alien concept.
And so in summary the easiest way to stop having headaches is to eat cheese, drink orange juice and drink one particular energy drink of which I’m very fond. It is a very odd world!

20140411-171558.jpg

27th June – Because fundamentally being normal is boring

I know it’s a little odd… But today I took my guides out into the forest in the pouring rain to collect wood for their fires in 2 weeks time.
When they arrived in a kind of soggy way, they hung up their coats and asked what they were doing, then one of the youngest said “but I thought we were outside collecting wood…” And one of the elder ones replied “yes but it’s raining” in a you are so stupid kind of way. This might have been the moment when I checked that everyone had a coat, found they didn’t and then found 3 spares in my car left over from when I really out to have taken them back in the house after using them and sorted people out.
Then as we were walking across the park I got asked why I was in shorts and sandals, now this is because I dry significantly faster than my trousers and shoes. And they looked at me a bit funny. Then they mostly ran around in the woods climbed trees and played in the rain and sang loudly and untunefully!
It was the walk back that was my favourite, the bit where one of the new ones who had only joined last week, look and me and said “you’re weird” and when asked to clarify said “well, we’ve just been in the woods in the rain to get dry wood to cook with” now this sounded sensible to me so I queried it again and she said “normal people don’t let you play in the rain, normal people stay inside in the dry, normal people get wood on the day they need it don’t fill their car with it two weeks early.” I may have replied “firstly did you enjoy it? And secondly if it had been raining when you were doing outdoor cooking how much harder would it be to get and light dry wood then than wood that has two weeks to dry out all be it in the back of my car?” And bless her she said “it was cool, we never get to do that, and it makes sense but its just not normal!”
I think she is beginning to understand that to fit in to my guide unit, you don’t have to be normal, it probably helps if your not. You have to be willing to be a little bit daft and enjoy yourself. Just remember, those normal people are missing out! (But on the down side I do still have a boot and a back seat full of wood for the next two weeks)

20130730-194306.jpg

26th June – A very unusual day

Today is apparently the first day of the rest of my life, this is apparently a good thing, but at the moment all I can see is the waste of the life so far.
i first became depressed and took my first overdose when I was 12, this wasn’t a light hearted attention seeking thing, there was no note, no chance of being found, it was a serious attempt, a significant amount of a variety of tablets and a small amount of alcohol to try to make the bit before they kicked in not so horrid. As it happened I was just very sick, my body apparently doesn’t tolerate too many tablets and each time I have tried to give up in this way I have just been very very sick as my body purges the poison. In my first case this was at school and I just got sent home with a ‘tummy bug’ as I threw up solidly for hours. Somewhat bizarrely for an allegedly intelligent person I don’t tend to remember that my body has this reaction to tablets when I take them in this quantity, and have repeated the procedure many times since, but always on my own, somewhere I wouldn’t be found and with the full intention of giving up.

I have been on more different types of antidepressant than is normal for anyone person as they have been trying to medicate me for just over 25 years, with varying degrees of abject failure. This version of gentle niggling sadness as a day to day norm, which spirals down and down, has just been a normal way of life for me for as long as I can remember.

I first started getting the random breathlessness when I was about 18, they assumed asthma and gave me inhalers, but it was never quite like that. The wheezing was always an instant thing and bore no relation to exercise or anything else. It was about the same time I started noticing pins and needles in my feet ( but only in my little toe and the half of the one next to it), and in my arms and hands (noticeably in my elbows and again in the little finger and half of the one next to it and the bit of my hand which corresponds to that). This was also the time that I found my legs did random twitching, only when I was sitting down and used to go into weird spasms, I told the doctor about this and as I later found out from looking at my notes he thought I was faking it.

This coupled with what could arguably be described as a relaxed attitude to everything (both work and the fun stuff too) meant that I’ve spent many year doing the ‘struggling to get out of bed’ because I’ve not seen the point in doing anything weather it’s been going down stairs to eat, tidy or pretty much anything else on bad days. To add into the mix I’ve had the headaches and the sinus problems and the glands that are up for months on end, the backache and all the fun stuff that goes with it. My friends (those who know me well enough to be brutally honest without the worry of upsetting me) tell me they know when my depression is bad because I drive like a nutter and drop things a lot (their kind and and polite way of telling me I’ve lost my spacial awareness.) At these times even I notice I have the mental retention of a goldfish, and can be hard work.

Over the last months as everything has been worse, I’d started noticing a hum, nothing serious just in that ‘can you hear that or is it me?’ kind or way and flashy lights in my eyes when I was tired.
I went back to the doctor for what must easily be the 5th set of blood tests in the last 6 months, but this time I got a different answer from the normal all clear.
This time I got a set of questions…
fatigue (extreme tiredness) – yes, you told me it was ME
lethargy (lack of energy) – yes, you told me it was ME
breathlessness (dyspnoea) – yes, you told me it was asthma
faintness – yes, you told me to drink more water and put on my records I was faking it
headache- yes, you gave me drugs for this
tinnitus (the perception of a noise in one or both ears, or inside your head, which comes from inside your body; for example, a ringing in your ears) – yes, you said it was my sinuses and sent me to see someone
loss of appetite- yes, you told me not to worry as I was putting on weight (even thought this might have been a side effect of the antidepressant)
a yellow tinge to your skin- not that I’ve noticed
a sore and red tongue (glossitis) – no!!!!
ulcers inside your mouth- yes, you gave me antibiotics over and over again (and they pop and are gross)
pins and needles- yes, you told me not to worry
a reduced ability to feel pain – well I don’t know, I walk into things a lot, it doesn’t hurt but I get massive bruises so I guess so… Unless bruising is coming up
a change in the way that you walk and move around – no idea
disturbed vision- yes, they would be the weird flashy lights
irritability- yes, apologies to everyone who has known me
loss of spacial awareness- yes, including dropping things and walking into things and eyeing up parking spaces that are way too small
muscle weakness- yes, that’s why I have such problems with my back and my ankles barely go a week without twisting, and my muscles get really twitchy and feel like I’ve walked miles, not just from the car (which just for the record you put on my records as me faking)
depression – yes, you have been giving me drugs for the last 25 years
psychosis – a condition that affects your mind and changes the way you think, feel and behave (not sure – may need further clarity)
dementia – a decline in your mental abilities, such as memory, understanding and judgement – yes, if goldfish brain counts!

‘Well’ he said, ‘that’s very interesting’ he said. ‘Your blood test has come back low in folic acid and vitamin B12, and those are the symptoms.” There was a long pause…. ‘Well, the good news’ he said ‘is that it may respond to treatment, so today could be the start of the rest of your life.’ And I know he meant it in a nice kind way, but quite frankly at the moment, sitting here with: my back in spasm; pins and needles in both arms and legs; the crazy flashy lights in my eyes and depressed as hell it doesn’t feel like a new and exciting fresh start, it makes me wonder what I could have done with my life, what I could have achieved, what I have wasted. It makes me think what if the any one of the overdoses had worked, what a waste and a farce it has all been. What would it have been like if they had correctly diagnosed me when I was 12, who would I have become?? And now I have four to six months to wait to see if I respond to the medication, if I could have the normal life other people have – or have I screwed things up too badly because I have been ill so long that even if/when chemically I’m normal it’s too late to try and aspire to a normality I have never known.

But on the upside… Today was also the day I was told that cheese and marmite and peanut butter (nothing else on the plate) count as a healthy meal!!!!

20130626-232913.jpg

24th June – My Pi day

Today I went to the local university and spent the day watching as my students got very frustrated with Raspberry Pi’s. there is a secret really geeky bit of me that loves coding, and thinks there is a calming beauty in watching what was just a series of letters make something actually do something… And, and I knows this is more odd, I quite like debugging too. I like the challenge of the needle in a haystack the thorn in the side!
And watching my students, who are not computer programmers doing this was enlightening, it showed up those with patience, logic, accuracy, dyslexia, short temper, those used to instant easy reward and who were getting frustrated.
And reminded me of the old BBC when computer games came on cassettes or had to be typed in from books. And made me smile when students who spend their whole lives playing PS3 or XBox looked dumbfounded when I kicked their arse at frogger!

20140420-010159.jpg